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“I am trying to create hope in a hopeless situation”

Name: Sebastian Penner

Age: 40 

Family: Wife and two children.

What: Diagnosed with ALS in June 2017. Runs the site Stoppa ALS (Stop ALS) which raises money for a clinical research centre at Karolinska University Hospital.

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Sebastian Penner, credit: Rebecka Uhlin.

“In the summer of 2016, I started experiencing weakness in my left hand and arm, while at the same time the muscles in my upper arm started twitching incessantly. I looked online and fairly quickly started looking at ALS. It was a severe shock and the start of a nightmare that I still wake up to every day.

My GP dismissed my concerns, but still referred me to the neurologist for an examination. I had to undergo lots of test and give samples. After a few months, I was first diagnosed with monomelic amyotrophy, which was then changed to ALS six months later.

When I was finally given the diagnosis, I had already processed the shock. My life had fallen apart already after researching online the year before. I had managed to take control of the panic, the anxiety and the grief. But having to call my parents and tell them was the most awful thing I have ever had to do.

To me, ALS is nothing short of a nightmare come to life. It is horrible to gradually become more and more trapped in your own body. But the worst thing for me is my children having to watch their father fade away. To avoid going insane, you have to get good at not thinking about the disease, about what you can no longer do and what you will lose. See the possibilities instead of the obstacles and find new ways to have fun and enjoy life.

My commitment to raising money for ALS research is my way of trying to make something good out of this terrible situation. It was the total sense of hopelessness I felt when I came into contact with this disease that lit the spark. I am trying to create hope in a hopeless situation.

I will definitely keep doing what I can for as long as I am able. For everyone who has fought and lost, for everyone who is living with this disease today and for everyone who will in the future.”    

As told to: Fredrik Hedlund, first published in Swedish in Medicinsk Vetenskap No 2/2019.